The name of the Federation is Aniridia Europe. It has its seat in Norway, in the City of Oslo. The Federation will operate according to the Norwegian Law. For the purpose of pursuing its objectives, Aniridia Europe may conduct activities and establish offices anywhere it wants to at any time, primarily in Europe. Only Aniridia Europe, by its governing bodies, can establish Aniridia Europe offices. In the event of an office being in another country, this Aniridia Europe office will operate according to the laws of the country in question. A change of the seat of the Federation to another country requires a decision by the General Assembly, as well as a change of these statutes according to the rules described in article 6.

Aniridia Europe is a European non-governmental and non-profit federation which consists of national legally recognized Aniridia organisations, non-legally recognized support groups and networks for and by people diagnosed with Aniridia and their families, as well as individuals diagnosed with Aniridia and their families. Aniridia Europe is politically and religiously neutral. Aniridia Europe welcomes members primarily from all the countries which geographically belong to Europe, but also from other countries, provided that the applicants support the objectives of Aniridia Europe.

The main objective of Aniridia Europe is to create a platform for cooperation between European national associations, support groups and networks, individuals with Aniridia and their families, as well as researchers and professionals working with Aniridia and related conditions. In more detail, the objectives of Aniridia Europe are to:

encourage and strive for inherent dignity, individual autonomy including the freedom to make one’s own choices and independence of persons; non-discrimination; full and effective participation and inclusion in society; respect for difference and acceptance of persons diagnosed with Aniridia as part of human diversity and humanity; equality of opportunity; accessibility; equality between men and women; respect for the evolving capacities of children diagnosed with Aniridia and respect for the right of children diagnosed with Aniridia to preserve their identities,

keep up with and support medical research on Aniridia and other related conditions and spread the information to the members of Aniridia Europe,

promote and improve exchange of knowledge and expertise between practitioners and researchers concerned with Aniridia and related conditions,

investigate social, political and cultural matters connected with the welfare of persons diagnosed with Aniridia and related conditions, as well as to promote and improve the exchange of information on such matters,

support the establishment and development of national associations of Aniridia and related conditions and promote co-operation at an international level between national associations for persons diagnosed with Aniridia and related conditions, as well as non-legally recognized associations, networks and individuals who are diagnosed with Aniridia and their families,

co-operate with or be members of other national and international organisations and institutions that have the objective to further the welfare of individuals diagnosed with Aniridia,

gather funds and collect, manage, use and distribute contributions, legacies and donations of their benefits, for the purpose of stimulating and promoting both medical research of Aniridia and related conditions and the welfare of persons diagnosed with Aniridia and related conditions,

serve as a meeting point for any and all implicated groups (people with Aniridia, their families, researchers and scientists, doctors, nurses, health care workers, etc)

participate in media and media events in order to keep the general public as well as public and private institutions, European or international, aware of Aniridia issues and concerns,

engage in other activities not specifically contemplated in these statutes, but which may favour the promotion, defense of rights and social and labour inclusion of people diagnosed with Aniridia and related conditions.

European national legally recognized Aniridia organisations will be admitted to Aniridia Europe as full members with full member rights in the General Assembly and in the activities of the Federation. To become full members, organisations must meet the following criteria:

Must be non-profit and non-governmental.

Must have a legal status appropriate to country of origin, with a written constitution and/or statutes. If no appropriate legal status exists in the country of origin this criteria may be waived at the discretion of the Board of Directors.

Must be a national organisation.

Must demonstrate commitment to persons with Aniridia in their guiding statements, such as their vision, mission or organisational objectives, and their activities. Typically the organisation’s mission will be to respond to the needs of persons with Aniridia in a specific country, supporting and representing them. This governance structure must be described and illustrated in a written letter accompanying the organisation’s application.

Must be member driven, i.e., the needs and views of persons diagnosed with Aniridia drive the organisation’s strategy, policies and activities in a significant way and the organisation is capable of representing the needs and views of these persons. Organisations achieve this in different ways. Organisations must demonstrate that the majority of the organisation’s voting members are persons diagnosed with Aniridia and their family members and that the majority of the organisation’s governing body are persons diagnosed with Aniridia and their families.

Only one national legally recognized Aniridia organisation per country is allowed as a full member. In case there are several Aniridia organisations in a country, these organisations should first of all try to merge. In case this is not possible, the Board of Directors has the right to decide which organisation will be allowed to be a full member and which one(s) will be allowed to be affiliated member(s).

In case there is not a national legally recognized Aniridia organisation in the country in question, but an informal association or network, this association or network or separate individuals can apply for an affiliated membership. Affiliated members have the right to attend and speak in Aniridia Europe’s activities but not to vote in the General Assembly.

The foundation of a national legally recognized Aniridia organisation in the country in question will result in the termination of affiliated memberships in the event that this national organisation is admitted to Aniridia Europe as a full member.

The General Assembly, upon suggestion from the Board of Directors, has the right to award people with an honorary membership, which gives the right to attend and speak at all Aniridia Europe’s activities including the General Assembly, but not the right to vote at the same. This type of membership is awarded to a person who has distinguished him/herself by making extraordinary contributions to improve the situation of persons diagnosed with Aniridia.

Membership adherence means fully complying with these Statutes as well as paying the annual Membership fee, the amount of which is set by the General Assembly. The Membership application, stating the level of achievement of the criteria required for being accepted as a member, must be sent in writing to the Board of Directors. The Board shall decide freely on Membership applications.

The decision to apply for membership in the Federation lies with the board of each national organisation, with the coordinator of each informal association or network, or with each individual in case no kind of association or network exists in the country in question.

An organisation’s membership may be terminated by a written letter of resignation addressed to the Board of Directors, legal liquidation proceedings or dissolution of the member association. The same rules apply to affiliated members, i.e. informal associations, networks and individuals who are not full members.

The Board of Directors, after due deliberation, may recommend the suspension or termination of any organisation’s membership as well as affiliated membership in Aniridia Europe. Sufficient cause for suspension or termination shall be:

willful violation of the statutes or any rule, policy or practice duly adopted by the General Assembly and/or the Board of Directors of Aniridia Europe,

any other conduct materially prejudicial to the interest of Aniridia Europe,

activities in conflict with the objectives of Aniridia Europe,

failure to comply with financial commitments to Aniridia Europe. Any member in arrears for more than one year with the settlement of financial commitments (most specifically membership fees) will be considered as having terminated their membership. In the event of the member having difficulties in complying with financial commitments, they may appeal to the Board of Directors. The conditions under which membership in Aniridia Europe can be maintained will then be reassessed ad hoc.

Membership can be terminated due to any activity considered detrimental to the best interests of Aniridia Europe. Any decision regarding an exclusion of this nature will have to be adopted by the Board of Directors, with at least a three-fourths majority of the Board of Directors. The member concerned will be informed at least thirty days in advance of the meeting and given the opportunity to hear the evidence and to defendtheir actions. The member has the right to appeal at the next General Assembly, in which case any decision adopted in favour of excluding the member will have to be adopted by a three-quarter majority of the members attending.

The organs of the Federation are the General Assembly, the Extraordinary General Assembly, the Board of Directors, the Scientific Committee, Committees on different topics, the Nominating Committee and the Auditor. The governing and supreme bodies of the Federation are the General Assembly and the Extraordinary General Assembly, as well as the Board of Directors, which acts as an executive body between the assemblies.

The General Assembly is the supreme organ of the Federation, and it is comprised of all members, whereof only full members have the right to vote. All categories of members have the right to attend and speak at the General Assembly. The General Assembly elects a Chairman of the General Assembly, whose task is to chair the meeting. The General Assembly also elects a Secretary of the General Assembly, whose task is to keep record of the meeting. The Chairman of the General Assembly has the right to restrict the speaking time of all categories of members, if needed.

Each full member organisation is to elect a Representative for the General Assembly, as well as a Deputy Representative for the General Assembly. Each board of directors of the member organisations appoints its representatives. The Ordinary General Assembly shall meet physically or by any appropriate means of communication, including telephone or electronically, at least every two years. The members of the Federation are convened by the President, at least two months before the event.

The agenda of the General Assembly is set by the Board of Directors who must communicate it to the members at least fifteen days before the fixed date of the meeting. The General Assembly listens to the reports on the management of the Board of Directors and those of the Auditor, approves of the accounts of the financial year, votes the budget of the financial year to come, approves of the year’s programme of activities of the Federation and of the upcoming two-year Activity Plan.

The General Assembly is to elect an Auditor, a Nominating Committee and a Board of Directors, as well as decide the number of members of the Board of Directors.

Aniridia Europe is administered by a Board of Directors composed of 4 to 9 Members, elected by the General Assembly by the Members of the Federation. The General Assembly elects from within its Members:

a President, the Primary Representative of the Federation

a Vice-President, the President’s deputy, acting as President in the absence of the Permanent President

a Treasurer, entrusted with establishing and maintaining, or empowering somebody under their responsibility, the accounts of the Federation

a Secretary, whose duties include the maintenance of administrative records.

Each task should have their own person assigned, although when necessary, any one person may be entrusted with more than one of these tasks.

Mandates are for a period of two (2) years and are renewable.

Each Member Association can have no more than one seat on the Board.

Members of the Board of Directors are recommended by the Nominating Committee, but any Member of the Federation may also suggest candidates for the Board of Directors. The same principle applies to the recommendation of candidates for the task of Auditor as well as the recommendation of candidates for other relevant positions, if the Board of Directors assigns the Nominating Committee to make such recommendations.

Voting by proxy is allowed in the General Assembly, the proxy containing information about which person is allowed to vote on behalf of the absent Representative, which General Assembly is concerned, as well as a signature and name specification of the absent Representative. Any Member may not hold more than one proxy.

The Ordinary General Assembly shall be valid regardless of how many Members are present or represented by proxy.

The decisions of an Ordinary General Assembly are made by simple majority. Each Member has one vote, that of the national legally recognized association he or she represents. In case of a tie, the General Assembly Chairman draws lots in order to cast the deciding vote.

When a person is elected at the General Assembly it is possible to perform the election by secret ballot, if requested.

Members may provide suggestions related to the development of the Federation, in terms of new activities or organisational matters, as well as matters regarding these statutes. These suggestions are to be submitted as motions, which should be handed in to the Board of Directors in writing at least one month before the General Assembly.

If necessary, the Board of Directors may convene an Extraordinary General Assembly in order to modify the Statutes, to dissolve the Federation or simply to address important issues that need to be decided urgently, according to the agenda of the Extraordinary General Assembly. An Extraordinary General Assembly may also meet at the request of at least 51% of the Members of the Federation.

The quorum for an Extraordinary General Assembly will be equal to half of the Representatives + 1, those physically present plus those represented by proxy. In the absence of a quorum, a new Extraordinary General Assembly will be convened, under the same conditions as above, which can then adopt any final and valid decision regarding the proposal.

Other than these exceptions, the Extraordinary General Assembly shall meet and deliberate in the manner as prescribed above in Article 5.1.

The Board of Directors is the administrative body of Aniridia Europe. In general, the Board is vested with all powers not exclusively reserved for the General Assembly.

The Board of Directors is composed of 4 to 9 Members, elected by the General Assembly by the Members of the Federation. The minimum requirement for the composition of the Board of Directors is that it is comprised of a President, a Vice-President, a Treasurer and a Secretary.

The Board of Directors may, if needed, invite advisors, experts and external consultants within the framework of the Board’s tasks. Advisors, experts and external consultants have the right to speak at Board meetings but do not have the right to vote at the same.

In case of vacancy, the Board of Directors can co-opt a delegate to sit on the Board until the next General Assembly. The mandate of the person so appointed shall expire at the time that would normally expire for the original Board Member.

The Board of Directors shall meet, physically or by any appropriate medium, including telephone or electronically, upon the initiative of the President. The President will summon the other Board members at least 15 days before the meeting.

Voting by proxy to another Member of the Board of Directors is authorized. Proxy shall be handed in to the President in writing before the meeting. Each Member of the Board may not hold more than one proxy.

No quorum is required for Board votes. Decisions are taken by simple majority of the votes cast by Members present or represented. In case of a tie, the President casts the deciding vote.

Board Members may receive payment for their Board work if decided by the General Assembly. A Board Member’s justified expenses will be reimbursed, unless the Board of Directors decides otherwise in specific cases.

The Scientific Committee shall consist of at least three and at most fifteen persons. Members of the Scientific Committee shall be distinguished experts either as practitioners or researchers within the field of Aniridia. Primarily ophthalmologists and geneticists are eligible to become members of the Scientific Committee.The Scientific Committee is designated by the Board of Directors. The Scientific Committee elects a Chairperson among its members. A second member of the Scientific Committee may be elected Vice-Chairperson. During its mandate, the Board of Directors can designate new members to the Scientific Committee upon recommendation by the Chairperson.

The Board of Directors may designate one or two of its members to maintain the contacts with the Scientific Committee, to provide a secretariat if needed and to participate in meetings of the Scientific Committee.

The objectives of the Scientific Committee are:

to provide advice and recommendation to the Board of Directors on the direction of research that should be followed and therefore which research projects could be funded by Aniridia Europe or recommended for funding to funding agencies by Aniridia Europe,

to foster communication between research groups and medical professionals across Europe and the rest of the world, with the aim of ensuring maximum visibility of research work to prevent repetition and to drive things forward at the maximum possible pace,

to be proactive by generating proposals for research and charitable funds for projects performed by the scientific groups that the Scientific Committee members are themselves part of (care regarding conflict of interest must be exercised in this case),

to be highly involved in the organisation of European conferences on Aniridia.

The General Assembly or the Board of Directors can, if needed, appoint Committees in order to specialise on different topics. The definition of the objectives of a Committee and the constitution of it is determined by the Board of Directors.

The purpose of the Nominating Committee is to make recommendations to the General Assembly regarding the election of one or several persons as Auditor, to the composition of Aniridia Europe’s Board of Directors and, upon assignment from the Board of Directors, also to other relevant trustees. The Nominating Committee is also to recommend remuneration for the Board of Directors, if needed. Its guiding principle is to choose the best candidate to fill the vacancy, while endeavouring to seek a balance between the personal and professional qualifications of a nominee and the representational needs, including gender, geographical balance and balance between persons diagnosed with Aniridia and their families. The Nominating Committee shall consist of at least three and at the most five persons. One of these persons is assigned as Chair of the Nominating Committee and is responsible for summoning the rest of the Committee and leading the work of the Committee. Eligible as members of the Nominating Committee are honorary members and any representative from a full member association.

The Auditor is elected among the active members of the Federation for a period of two years, which is renewable. His or her role is to watch over the regularity of the Federation’s accounts and make a report to the General Assembly. The Auditor also recommends the General Assembly whether or not to adopt the report and the accounts for the past financial year. The Auditor’s term ends at the General Assembly deciding on the accounts of the financial year in which this period of two years expires. If the General Assembly so decides, more than one Auditor can be elected as well as a Deputy Auditor.

Aniridia Europe’s statutes may be amended, repealed or altered, in whole or in part, with a three-quarter majority of the General Assembly or Extraordinary General Assembly attending or represented by proxy and entitled to vote. Amendments may be brought before the General Assembly by the President at the request of either the Board of Directors or by Motion from at least one Full member. The request must be in writing.

Any proposed amendment must be received by the President at least thirty days prior to the General Assembly or Extraordinary General Assembly. A copy of any amendment proposed for consideration shall be sent to all members at least fifteen days prior to such a meeting.

Alteration to the statutes will not come into effect until the alteration is registered with the Norwegian Authorities.

The Federation can be dissolved by a decision of a three-quarter majority of the General Assembly or the Extraordinary General Assembly attending or represented by proxy and entitled to vote, in two consecutive meetings, whereof one has to be a regular General Assembly. The provisions of article 6 in these statutes apply. The Federation will continue to exist after dissolution to the extent necessary for the liquidation of its assets. Documents and announcements sent by the Federation must contain the words “in liquidation” after its name. In case of dissolution of Aniridia Europe, one or more liquidators shall be appointed by the General Assembly. The liquidators are subject to the provisions concerning the appointment, suspension, dismissal and supervision of Board members. During liquidation the other provisions of the statutes remain in force as far as possible. Liquidation ends when the liquidators are unaware of the existence of any further assets. Any assets shall be distributed in accordance with the wishes of the General Assembly. In case of lack of specific instructions from the General Assembly in this matter, any assets shall be distributed in accordance with the legal ramifications of the Norwegian Law. On completion of the liquidation, the books and documents of the dissolved Federation will remain in custody of the person designated by the General Assembly or the Extraordinary General Assembly for that purpose for ten years. In accordance with the statutes, the credit balance after liquidation will be used for those purposes to be determined by the General Assembly or the Extraordinary General Assembly in keeping with the objects of the Federation.